Thursday, December 20, 2018

He Ain't Done with You Yet

Rabbit to Bear: I will always be by your side.

And the Principal Care Provider looked up at my husband from her computer and the mess of sheets from Gundersen Lutheran Hospital in front of her. She sighed and then asked how are you feeling?

"Like shit," he answered simply. Dr. Sauvery knows Rich well enough to know that means 'overall crappy in health and mood'.
"Depressed over this?" she asked.
"Well, of course."

She nodded. "That was a significant PE that you went through. Frankly I am surprised you are alive. Very few people survive what you went through so I guess you should feel lucky?" Dr. S is straightforward and she knows Rich wants to hear it that way.

"Lucky?" he asks with a glance at her and then the floor, "Lucky? Well I don't know about that. I may feel better if I was dead." His hand comes up shaking a bit from his enormous fatigue.
"To live like this? This is not being alive."

She nods, "Yep, your are right, but you survived and you need rest and you WILL feel better."
She does and exam as she talks. "You are amazing, all of these things you've been through would have,"...she shrugs, "you must have amazing genetics and you must be here for a very good reason."

Rich looks tired and worn out. So Dr. S sits next to him and puts her hand gently on his arm.

"You go home and rest, follow your meds. YOU let Christmas come to you and New Years also. You set in that easy chair and tell the kids that Grandpa is tired and needs his rest. You enjoy those kids. You enjoy them seeing you. Have family make visits but be short. This is winter and the weather is yucky, you don't have to go out and do stuff outside..."

This was the longest 'speech' Dr. S has ever made. Then when we stood to leave, she hugged Rich and then me. Her parting words were said quietly, and I don't believe they were meant for Rich to hear...or???

"Watch over him as you do. You are an Angel at his side."

We check out at the desk. Rich has known the receptionist there for many years. She asks, "Dang Rich you were in the hospital again! What happened?"
He responds, "Well I guess I am lucky to be here, most don't make it through the really bad blood clot thing I had I guess." He shrugs.
The place is quiet and the other receptionist steps over.
She has a very southern drawl.
"Sir, I think God put you on this Earth for a reason and ain't done with whatever He has intended for you."

We set up the follow up appointment, Rich comments quietly, "If I make it to spring."


I helped my exhausted sweet heart get into the Subaru and get settled. The sun was getting ready to set in a blaze of colorful glory. Rays of light blasted through holes in the clouds and went up into the sky while another set lit up the countryside.

Rich reclined in the seat and was silent for our drive home.

Rest.
See your family.
See your Grand children.

My mind went places it perhaps shouldn't have.
He had cheated death again. The Grim Reaper had knocked on the door a week ago on that frosty foggy morning.
Exactly how much more pain and discomfort could a person live with.

"Sir, God put you on this Earth for a reason and he ain't done with you yet."

I wonder. And I drive home in the quiet car and fight back all sorts of thoughts and emotions.
I reach over and lightly hold his hand while I can on the nice straight parts of the road.

We've had quite the journey together, I think.

Tuesday, August 14, 2018

MDD



Major Depressive Disorder sometimes doesn't respond well to medications.

My husband has battled ... or lived with depression for many years. Treatments come and go in the form of "Let's try this medication or try this medication". Sometimes the meds fail miserably.

Rich is a very unusual person in that most prescribed meds seem to have severe side effects in some way. His medications for depression seem to take the edge of for a few years and then stop working.

During his treatments for Throat Cancer he had an anaphylactic reaction to a 'safe' chemo medication.

The cycle came around again. The last time we saw Lindsey [Rich's psychologist] I told her exactly what would happen. I also met his psychiatrist in the hallway and cornered him with Rich's previous psychiatrist.
I warned the doctors of what was going to happen and what had happened over the years.

"Rich is a train wreck speeding towards a crash and burn again. And you guys need to know this, it gets worse and worse ... he speeds like a locomotive out of control and then hits the end of the tracks..." I took my hands and threw them in the air, "..and boom. I am sitting in the ER with him and I keep coming back until he is admitted for an in hospital evaluation." I pointed at the doctors and then said, "You know it. You do. Look at the records for the past 20 years. Let us prevent that train wreck."

Oh they nodded and agreed. And as before, they suggested a change in medications.
I'd made my point that day but knew I'd be making that drive to the ER soon enough, but hoped that I wouldn't have to.

Over the past week Rich's depression worsened. He did get up a few times and interacted with our company but retreated to the bed. I noticed that he didn't want to take his medications, he didn't want to drink fluids, he just wanted to be in bed and then complained that all he could do was lay down and stare at the ceiling fan.
By Monday morning he had withdrawn completely.

I called and talked to the triage nurse and I knew that we'd be heading to Madison.

He was admitted for MDD that was severe.
Different treatments were discussed and reviewed by the Mental Health team.

It seems that he will be a candidate for Ketamine Infusion.
I'd never heard of it before.

...And forever, I will support him and help in whatever way I can...



You're broken down and tired
Of living life on a merry go round
And you can't find the fighter


When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
And move mountains
We'll take it to its feet
And move mountains


And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousands times again
For you
For you
For you
For you


[Andra Day: Rise Up]

Thursday, July 26, 2018

The Heart Brain connection

For all of the time I've known Rich, he has struggled with depression. 

Yesterday I was talking to a nurse from cardiology who wanted to discuss the Holter Heart Monitor versus the Medtronics Loop Implant that Rich had.
His stress test had come up with some 'abnormalities' and so his PCP had ordered a Holter Monitor for him.
The Medtronics Implant recording any A-fib incidents. This could have been the causes of his stroke and TIA's.

The Holter would look for PVC's or Premature Ventricular Contractions. 
I told the nurse that he'd worn one in 2015 and the last echo was done either then or in 2012 when he was having so many problems with his anti depressants medications.

She confirmed that he had PVC's in 2015 and also an echo done then. She had seen that they had been done previously also.

I hung up the phone after our discussion. Rich would get the monitor and they'd try and figure out how often he had PVC's.  I did a bit of research as a pattern started to form in the back of my head.

Every time Rich's anti depressants stopped working for him, he had more fatigue, dizziness, and had been pointed in the direction of cardiologists who did tests added meds because his blood pressure would fluctuate wildly,...did more tests, and generally could not figure out what the issue was.

What happens to the body during a period of severe depression?
Any stress or anxiety sends the blood pressure through the roof, causes heart flutters, dizziness, and sometimes confusion.
The brain is the master of the body organs. When the brain cannot function properly the heart and other organs cannot function properly.

Every single time 1998, 2002, 2012, and now 2018 there has been a pattern. The doctors of the physical being don't connect with the mental health doctors and vise versa. 

Rich's statement, "I can't do anything, I feel weak, a bit dizzy, and feel like I will tip over."

When the depression meds slow down and stop working the anxiety builds. It is slow and insidious. 

Put it all together and the pattern works.

I will say that the VA facility we go to have excellent doctors. Some of the very best! However.
Most of the PCP docs and the psychiatric or psychologists rotate out of the VA every few years. There are no doctors that have been through even one full cycle of depression recovery and the pitfalls with Rich. 

I've been there since 1996 and have seen a pattern develop over the years.

We fight the heart, dizziness, fatigue, mental stress issue with the physical doctors. Nothing seems to work as he declines.

The mental health doctors talk and try to adjust the current mental health medications.

Rich spirals downward until there is a crisis. 
Rich is admitted through the ER.
Rich's 'team' changes his meds and monitor him.

Rich is discharged to home. Much better and out of that dark place. 
We all feel relieved.

We skate on a fine line holding off that dark place of depression for a while until it slowly creeps up again and takes hold.
The cycle starts again.

There is a heart - brain connection. It is there.


Look at the studies regarding dementia and strokes. There are studies also that research depression and its physical manifestations.
Treat only the physical symptoms and the mental issues do not go away.




Wednesday, July 25, 2018

Testing, testing...

Monday morning was a stress test. Working with a person who has severe depression is and can be very frustrating.

I got him up early so I could get him to take a shower.
"I can't, I have to lay down."
This is where it gets frustrating.
I put my hands on my hips and feel the anger grow. I get a bit snarky, "So why do you need to lay down? Are you dizzy, tired, out of breath..." I take his 02 levels and they are fine.
In my mind that says it is the depression talking. He needs to move, he needs to keep moving.
So I become the bad guy. "Your 02 levels are fine, your blood pressure is good. Do you need me to get the shower chair and help you? Are you dizzy, why do you need to lay down."

I can't help myself here. I am trying to get him ready for a doctor's appointment. I tried all day yesterday to get him to shower and he was too tired. Yet he could watch the streaming on the small flat screen TV for 3 hrs.

He gets angry with me, gives me the look, and goes to lay down. I stand in the bedroom door and fume. I look at the clock, he needs to shower.

That is how the mornings go with appointments at the VA. Nudge, push, push, nudge, frustration and stress at just making the appointment on time in Madison which is 89 miles away.

The stress test came back 'abnormal'. That is all the tech would say. Cardiology called yesterday morning and scheduled an echocardiogram. I wonder how abnormal is really was if the echo is scheduled nearly a month away.

As is our normal routine when not rushing to get ready for an appointment, I left hay out for Rich to feed Bob and Thor. I reminded him that I had an appointment with the manager for his mother's apartment lease.
I contacted the attorney who will be her guardian to get some guidance and told him that I'd bring him lunch back from The Corners Restaurant.

When I returned home, he had his boots on, but was sleeping. I woke him up.
I gave him his burger and fries and then asked how feeding the donkeys went.

"I was too tired," came the answer.

I was quiet for a bit while I made copies of the POA paperwork and arranged some papers for him to sign regarding his mother's paperwork for elderly housing. The lease would not have to be signed until she had the new guardian in effect. That was a huge relief.

Finally I said, "Oh. Okay. I guess that is why they brayed when I drove in. They are hungry."
I got a nasty look and he sighed. "I better go feed them since somebody wants to play psychiatrist and tell me what to do."

I stack my copies of paperwork and shrug.
He stops at the door, "Is it hot out?"
Snarky remarks want to fly past my lips...but I press them closed and then say, "Well it isn't too bad."

He feeds the donkeys and comes in with a huge sigh. "There, don't I look cured! Don't I feel awesome? Don't I want to just run up and down and be fine? Oh look I am all better!"

Picture these words with aphasia and it actually is more drawn out and difficult. But I get the jist. He is angry at being made to move against his will. He wants to just go to bed, which he does for the rest of the afternoon.

I gather up items to go to the forest and go fencing. In my back pack I throw some toys. I won't have time for it,....but you never know.

We ... he argues with me again later after I draw out a map of how I am fencing. I tell him to get on the 4 wheeler and I'll show him.
"Quit trying to be the stupid doctor, I just need meds to make my head better. If my head is better I'll be better. Just stop it."

I let him blurt it all out and listen. I want to say to him that since he has gone out to feed the donkeys daily he has improved. He has anger which is better than two weeks ago when he had no emotion. He takes it out on me of course and I sit there and want to point out the good things that are small baby steps. He won't hear any of it.

I finally tell him that I'm going out to the garden. I leave and am there until nearly dusk.
Surprisingly he does come out of the house and onto the porch. He pulls up a chair and we are friends again as we quietly snap green beans.

Oh yes.
I did have a moment or two for some silliness.
And it makes me laugh.

Toys given to me by neighbors and other kids....
why not? We all need to smile and laugh.


Testing? He tests my patience. It is a good thing I have a LOT of it.

Saturday, July 21, 2018

Depression 101

We met with Dr. Lindsey, she is young bright and a psychologist. She is doing her stint at the VA Hospital.

She asks Rich if he knows why he is there? He squints his eyes and seems to think. I've noticed over the years that the eye squinting comes just before his answer which is:

"I want to feel better. I just want to feel better. I feel like I am dying bit by bit."

This has become his new mantra of sorts. Anyone asks him how he is or how he is feeling, that is his answer. As I watch the doctor glance at him and scribble notes, I realize that the words are slightly different but the answers have been consistently the same for all of the years I've known Rich.

Lindsey asks him if he knows what causes him to feel this way.

"I don't know. I just want to feel better. I am tired of feeling like this."

She looks at him and me and then prompts him by asking if he read the letter from the neuro-psychologists. He shrugs. Their letter with multiple diagnosis of his medical issues weren't of interest to him. I let her know that but tell her that I did in fact read it to him.

Rich shrugs.

"Rich do you know that you have also been diagnosed with Major Depressive Disorder?"

Another alphabet diagnosis I think. In medical shorthand MDD. A light goes on somewhere in the back of my mind. And for some reason I am not surprised at this diagnosis. It makes sense, I felt his meds were starting to fail him, but as always his re-occurrences of depression always have a way of sneaking up on us.
So it was official. MDD. This explained quite a bit.

Lindsey continues, "So Rich I am here to help you figure out how to feel better and break this depression cycle."

He looks at her and squints again. "I have no idea how you think you can do that."

She doesn't get discouraged. Good for her, I think. Lindsey begins to explain the methods of getting a person out of major depression. She asks questions and he haltingly answers.

It almost seems as if he doesn't want to get better. But then I am not surprised as this is the depression stacked on top of COPD, and PTSD along with stroke and the some level of dementia or cognitive dysfunction. I wonder how in the hell are the doctors and I are going to pull him up and out of this.

Lindsey draws a map for Rich to explain what she is talking about.

"You want to feel better," she says, "this has to do with your thoughts and feelings, we need to help them. One of the ways is to get out and do something. Get away from the bed and be more active."

He grimaces. "I can't. I hit that wall and if I don't lay down, I'll tip over."

She thinks a moment and then asks, "Are you a fall risk?"

"No, I am fine. I just get so tired." I can see by his expression that he doesn't believe her.

Lindsey draws out something on paper and shows it to him.

[I took the liberty of going into Photoshop and making the following graphic to mimic her hand drawing. I chose bright colors because I always want to feel hopeful]


"Your behavior effects your thoughts. If you start here and get moving, doing something different that you used to enjoy then your feelings will improve and your thoughts will improve."

He stares at the paper and I know he doesn't see it.

The discussion goes on for a while. I suggest fishing. Rich says he 'can't'. What if he gets short of breath? I reply we'll have 02 along. What if he gets tired? We have seats in the Subaru that recline. What if he can't ... make it to the car? We bring fold up chairs.

Lindsey uses encouragement and Rich is given an assignment to go fishing. [Now looking at my calendar and the weather, I see no time for fishing.]

Then Lindsey does something surprising.
She turns to me and asks, "How are you doing?"

"Honestly? Some days I have no idea. I get frustrated, short tempered, ..."

"What sort of support do you have?"

"I have a neighbor who will listen. There is a group that meets in Viroqua once a month but generally I have appointments that day and it is during the time I need to be doing chores."

"Would you consider counseling?"

"Can't afford it now that I quit work to take care of Rich." I state.

Lindsey reads her notes and then says that the VA will provide those veteran spouses with care when the veteran is 100%. I am surprised, I knew about that but never had anyone at the VA approach it.
Lindsey says she will look into it. I believe she will.

Our ride back from the VA is long and I am tired after 3 appointments. Rich uses his 02 while he sleeps in the passenger seat. My mind mulls over the depression issues and how can I work to get him to 'move'.

When we get home I tell him that he will feed the two donkeys every day like he used to.

He fires back at me: What if I can't make it? What if I can't walk there and back?

Me: Then I will sit with you in the dirt until you can make it.

Him: What if I get out of breath?

Me: I'll bring you oxygen.

Him: Oh like this is going to cure me huh?

Me: Nope. But if you keep laying in bed all day long and never moving, you will make yourself worse, your heart will fail, your lungs will fail, and your mind will fail. Move it or lose it. You tell your mom to move, you need to take your own advice.

Him: I'm going to bed.

Yesterday though, I stood my ground and he did walk to the shed and get flakes of hay to feed Thor and Bob. It took an extra hour or so of my day. But it got done.

Depression is an ugly thing.










Saturday, July 14, 2018

Offering some hope

We met with Rich's PCP...Primary Care Provider this week.

She is one very straight forward person and she also tells you like it is.

"How are you today Mr. Ewing?"

Rich shrugs. "I'm dying bit by bit."

She answers, "We all are, but I understand how you are feeling. Your meeting with Neuro-psychology flagged you for severe depression. We need to turn that around as quickly as possible."

Rich stares at the floor and then something far away. "Nothing can make me feel better, I just want to feel better once, you know?"

She nods. "Of course you do! I've put in a call to your psychiatrist and he needs to review you AND see you ASAP."

I interject. "I wonder if his meds don't work any longer. Rich has a history of his medications for depression working well for about 6 to 8 years...and then..."

She nods and types swiftly, "You are absolutely right. We may end up with a different regime of meds. And speaking of that we are going to stop the Tamulosin right away. I think you have had nothing but poor reactions to it..."

I pipe up. "I know Rich doesn't want this, but can we look at oxygen therapy? Lately he can't function very long without going back to lay down with his CPAP and 02. He feels extremely fatigued and 'out of it'."

She nods sand turns to Rich. "We will test you, and your heart, your lungs are not elastic so you may need oxygen to keep from damaging your heart, lungs, and brain further. Are you open to that?"

Rich makes a face.

Doctor pats him on the back and says, "Struggling to think, to walk, to breath, is no fun. This will help."

I point out that since he spends up to all but 4 to 5 hours a day with his CPAP and 02, that he is already ON oxygen. She agrees and I see Rich make that connection.

He asks about the aneurysm. She looks at it and says, "If they want to do it, go for it. IF you go in alive you come out just fine." She is not being cavalier, just straight forward.

She types some more.
"I'm ordering a stress test for your heart. I'm putting in for an immediate re-eval of your psych meds."

Then she turns to him. "You know, you are dying, we all are, but I think we can make some adjustments so you don't feel so depressed, so tired, and so frustrated.
I'm going to put you on Aricept for your dementia. I see you will be visiting speech therapy, OT, and cognitive therapy."

She raises her hand and draws a line. "I want to hold you here for along time. Mr. Ewing, you will live and you will feel better. You have a good partner and wife, she is looking out for you."

We leave and I think we both feel a bit of hope.

Is it real hope? I believe so. Because not believing it is not going to help us.
Hope always helps.





Tuesday, July 10, 2018

The letter & Appointment

The letter regarding Rich's test results with Neuro-Psychological testing came today.
The letter diagnoses Rich with a major neurocognitive disorder called 'dementia'. The severity is considered mild at this time.

The letter goes on to list the main causes of his diagnosis. In some ways I am glad the list is there and in some ways I find it offensive. In one hand I knew that his health issues are all contributors to his 'Vascular Dementia' however having it printed out in black and white seem to be a shock.

Depression and PTSD are major contributing factors but cerebrovascular disease are the main causes. Yes, I knew that.
The facts are there.

I asked Rich if he wanted to read the letter. He waved a hand at me. "You read it, you can understand it."
So I read it.
The recommendations are fairly straight forward. Exercise, quit chewing tobacco [he is trying when he remembers], eating healthy [we mostly do], speech therapy, language therapy to help practice communication skills, and thinking skills.

Exercise. He preaches it to his mom. And when I ask him to do something physical -- he can't or is it he won't? I think it is *he cannot*. He says that he feels exhausted at all times. He says he can't, he can't do it. Over and over. If I push for him to do something physical he gets angry and goes to bed.
I get tired of pushing and asking him to help.


During the afternoons now, he watches Netflix and sits on the edge of the couch with the volume turned up nearly as high as it can get.
I can't go back and change his lifestyle that lead to this place we are at now. I can only try to deal with it one day at a time.

Yesterday we had an appointment with Neurosurgery. We were nearly late when we arrived at the VA so I hustled us to the floor where we'd seen Neurology last year only to find out we were in the wrong place. Again, we rushed down to clinic B.

After the vitals were taken [his blood pressure was high] we were ushered into an exam room.
The doctor sat down and I innocently asked why we saw him in this clinic rather than the clinic upstairs.
He very pointedly told me that HE was Neurosurgery [emphasis on surgery]. Upstairs was Neurology, they were vastly different.

I explained that we thought we were there because he was supposed to see Neurology for a follow up in one years time. [Emphasis on Neurology]

He batted an eye and then asked Rich if he knew what he was here for. Rich glanced at me and then the doctor. He shrugged. "Because of my brain?"

The doctor launched into his spiel. "The CT scan you had done a few weeks ago show a change in your brain aneurysm. We are here to discuss ways of dealing with that. Did you know you had an aneurysm?"

Rich glanced at me. I answered, "Yes Dr. Kabbani who did the surgery to clear the clots in his brain told us that last year in May of 2017. The neurologist that we saw last year at the VA also reviewed it at the time. The aneurysm is in the Circle of Willis and it is a fusiform aneurysm. We were to follow up with Neurology one year later."

Rich added in his halting aphasia way that he knew the Doctor had to go in more than once to get stuff out and that his thoughts and words were scrambled.

The NeuroSurgeon turned and began typing rapidly. He started to read Rich's history. I pursed my lips. This doctor hadn't done his backround on his patient. My confidence level in him changed. What happened to cause this appointment? Did he note that Rich had a rare aneurysm? One that would be an interesting case to 'fix' surgically? The doctor was a UW Madison doctor, the UW is excellent and is also a teaching hospital.

Finally he turned back to us and said, "I see, last year you saw Dr. ---- in Neurology and he consulted with Neurosurgeon ... Dr. ---- and that doctor said nothing needed to be done at that time."
He frowned and then continued, "I'll put a call into Dr.----- and see what he recommends for this change in your aneurysm."

Rich stared at him and then the doctor pulled out a sheet of paper and explained to Rich what his odd and rare aneurysm looked like and how difficult it could be to 'fix' because it was between two major arteries that fed the brain.

"We may need to do an angiogram or another CT...," he went on, "..and then make some decisions..."

He made a quick exam of Rich and his reflexes then asked a few questions. He then reiterated that he'd let us know what was going on.

I stood and looked the doctor in the eye. "You do understand that my husband has been recently diagnosed with Vascular...." I let my words fall off.
He nodded. "I read that."

"You have read his history and health then right?"

The doctor nodded.

I don't think he really had. I think he saw an opportunity to see and possibly do surgery on a rare case. I think Rich's brain was of interest to him. His demeanor was not compassion for the whole person.
I decided that I didn't like him at all.

We left with no plan of action and we felt as if we'd been broadsided.

On our way home Rich said, "My life stinks. I have no life. I don't think I want that guy inside my head."
Me: Then he won't be.
Him: I mean what if the thing blows up? I mean what if he fixes it and I keep on living like this?
Me: Well he didn't really end up talking surgery, but I wonder what the risks are.
Him: Me too. What if he scrambles me more.
Me: Won't happen. I won't let him in there if those are your wishes.
Him: I'm dying a little at a time anyway. I'm so depressed.
Me: Silence.

Him: Do you suppose I can go to the doctor just ONCE and get some good news?
Me: Silence again.
Him: What next?

Rich reclined the seat and went to sleep while I drove.
I thought about the letter and how we were supposed to push and pull, exercise, OT/PT, mental exercises, ....push push push.

Indeed.
What next?